special-needs

#MicroblogMondays: Don’t Tell Me it’s Going to be Okay, Tell me it Sucks

My daughter had a physical therapy evaluation today and we received worrisome news. Nothing traumatic, her life isn’t in danger, nothing like that, but still, news that means more evaluations and therapy and hurdles for her to have to deal with. This sucks.

I know as I tell my loved ones the news, I’ll be met with their undoubtedly best intentions, and they’ll respond with “she’s tough, it will all be okay” and “it’s good you have some more answers now” or “well, now you know what direction to head in” etc. Fine. I appreciate their encouragement. I know it will all be okay. This kid is tough, she’s been poked and prodded, had tubes and lines in her, has overcome so much. I want her to have it easy. The fact that over 10 years into her life, she still is in pain and still in therapies and still sees too many specialists and still doesn’t have things easy, sucks.

eOT

My Supergirl

I know we’ll see the right specialists and tackle this like her and I have attacked so many other struggles before. Tonight though, I just want someone to tell me they get it. Acknowledge my frustration and hurt and fears for my little one. I don’t need to hear it will all be okay, tell me it sucks, because it does.


As always, major thanks to The Stirrup Queens for #MicroblogMondays. Join us!

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#SingleMomProblems: Life, Work, & Benefits

This is partly an off-shoot of my prior discussions regarding the fiscal cliff and women, and partly a vent. Four years ago I found myself back in New Jersey, where I grew up, starting a new life. In nearly every way, this was a good thing. One exception was my lack of healthcare. I looked at various options, and paying for my own insurance was not something I could afford. At the time I was attending school, and even through the college the only insurance I was eligible for was “accident insurance.” I never fully understood how much was covered and how much help it would have been had I utilized its benefits, but it was only for certain types of accidents. I finally decided to go to Planned Parenthood since I was due for my yearly exam and I knew that was the only place I could actually afford to do so. There I was, at 31 years of age going to Planned Parenthood for the first time. I’ve been going there for my yearly exams since. As I said previously, it’s my sole assurance that I’m in good health. I am a freelancer, mostly in the field of art and writing, but I’ve also worked with special-needs children. None of my jobs have included benefits of any kind.

Some may say the simple solution is then for me to shut up and get a traditional job with benefits and be done with this whole discussion. That’s not so simple. For starters, I was out of the workplace for ten years as I was a stay-at-home mom. This was the first strike against me, followed by my lack of a college degree, which I’m still working toward. Essentially the jobs I’m most capable of getting are in the retail sector and involve committing to nights and weekends. This is not an option as childcare during those hours is impossible to find, let alone afford. The other issue with such jobs is that most will only hire you for up to 39 hours so they do not have to offer you benefits. Oh, and the pay? As low as $7.25 an hour. I would be paying a sitter more to watch my kids than I was actually earning each hour I worked. That simply doesn’t compute. As a freelancer, I have a higher hourly pay and am able to be there for my kids. It’s seemingly the best of all words–if only the work was more guaranteed and health benefits were affordable.

I am a single mom raising two young children on my own. I don’t have the luxury of having every other weekend and a weeknight or two each week free to work. I am the only parent available when the school nurse calls to say one of my kids is sick. I’m the only one able to take them to a doctor’s appointment or care for them while they are ill. To further complicate things, my youngest child has some special needs. She is currently mainstreamed in school, only receiving speech therapy for her articulation disorder; she has come far and continues to make progress. She is still followed by a couple of specialists, but thankfully many of her health problems have improved with age. She had a feeding tube until a year and a half ago, just as an example of how severe her conditions were and how recent. Two of her major issues now are migraines and a weaker immune system. Because of this, she misses more days of school than the average child, almost fifty last year in fact. I am unable to have a traditional 40-hour a week job outside of the home because of this. Every time I consider taking a more traditional job, I’m reminded of how frequently I need to stay home and care for her, and of course the times her sister is sick as well. No employer would allow someone three, four, or more days off each month for this. Simply put, my options are limited.

Strictly speaking in terms of medical coverage, it’s something that becomes a greater priority with each passing day. I feel like my health is a ticking time bomb at this point. I’ve been lucky in the past couple of years that I haven’t had any serious illnesses. I’d like to have insurance as an option so that I am able to better care for myself and not have to fear getting sick. That is why I’m adamant about universal healthcare. While I may struggle at times to find work that allows me to be flexible, I’d prefer to stay with my current career and have the opportunity to also have benefits. My priority is being able to care for my children, in particular my youngest when she is ill and requires medical treatment.

So that is my dilemma; figuring out how to make life and work and, hopefully, benefits all work out. It really shouldn’t be so hard.